Harvey Singers new article

[Hrosenkrantz]

Yes -- i have no issue if a doctor wants to say pandas treatment wont help your kid, but this treatment will. The problem i have is with doctors who dont offer any treatment, and just say why pandas/pans treatments are bad

[kimballot]

Pardon me if I'm not fully knowledgable about the politics of all this, but why would this Singer guy be so ######-bent on disproving PANS? I've met doctors/pyschiatrists who don't really believe in it or who don't think the treatments work, but why is this guy so oppsed to it?

Singer is colleagues with Dr. Kurlan - who was from Rochester, NY but then moved to Hopkins. Kurlin headed up the large, longitudinal study of kids with Tourette that separated out kids who seemed to have exacerbations of tics and OCD when they were sick and called them "PANDAS" and then compared them to the "non-PANDAS" tourette kids. The abstract of his study basically says there was no difference between the groups, and that is as far as most pediatricians or other folks get when they "read" the study.

 

They published the originial study in a high-profile journal and that study really was a notch in their professional belts. They became famous and basically told the medical community that just because a child develops tics and had a recent bout of strep does not mean that the two are related. Kids fall who fall out of trees and break their arms probably had Pizza recently, but it does not mean that pizza makes you fall out of trees (yes - I have heard that quote from more than one doctor).

 

This article by Singer is the bloodwork follow-up to that Kurlan study (just like Cunningham's 2006 article was the follow-up to Swedo's 1998 paper).

 

The thing they don't tell you in the abstract of the original article or in this artical though ... is that

 

1. The kids in that study may not have even had PANDAS

2. The kids in that study were tested for strep every month and their pediatricians were given permission to put them on antibiotics if they tested positive for strep (heck, most of our kids would not have exacerbations EVER if they had monthly tests and treatment!)

3. The kids in that study stayed on their medications designed to decrease tics and decrease OCD... then the authors reported that they did not have an increase in tics and OCD when they had strep (which was probably quickly treated with antibiotics anyway - see #2 above).

 

All in all - a whole lot is at stake as far as the reputations of the researchers here and, unfortunately, our children are caught in the crossfire.

[pr40]

most of this discussion is way bayond me. However, there may be another thing going on with Singer's research, namely that he is trying to contest that PANDAS is auto-immune. I've been reading a bit about MS and there the trend is to show that it is not autoimmune. But they identify auto-immunity on what seem to me to be rather simple terms.

Here is a quotation: "From most references gleaned in the literature, MS is boldly stated as an autoimmune disorder. However, the evidence for such a statement is weak and circumstantial. We have updated and revised criteria for determining whether a disease is autoimmune in nature [14]. The main criterion of a given autoimmune disease is that a precise autoantigen be present in all patients with the disease. Despite multiple attempts to identify various proteins, lipids, and gangliosides in myelin as potential MS antigens, none have been proven or confirmed" (http://www.hindawi.com/journals/ad/2012/969657/).

So, what they are saying is that there are no autoantigens that they can identify. And so they see MS as an immune disase. If this is correct, for Singer's study it does not really matter if kids had PANDAS or not -- after all, we can not yet determine that -- but if he found auto-antibodies.

the fact that he did not should tell us only that Singer could not find auto-antibodies in either Touretts or Pandas and nothing else.

Edited December 23, 2013 by pr40

[kimballot]

most of this discussion is way bayond me. However, there may be another thing going on with Singer's research, namely that he is trying to contest that PANDAS is auto-immune. I've been reading a bit about MS and there the trend is to show that it is not autoimmune. But they identify auto-immunity on what seem to me to be rather simple terms.

Here is a quotation: "From most references gleaned in the literature, MS is boldly stated as an autoimmune disorder. However, the evidence for such a statement is weak and circumstantial. We have updated and revised criteria for determining whether a disease is autoimmune in nature [14]. The main criterion of a given autoimmune disease is that a precise autoantigen be present in all patients with the disease. Despite multiple attempts to identify various proteins, lipids, and gangliosides in myelin as potential MS antigens, none have been proven or confirmed" (http://www.hindawi.com/journals/ad/2012/969657/).

So, what they are saying is that there are no autoantigens that they can identify. And so they see MS as an immune disase. If this is correct, for Singer's study it does not really matter if kids had PANDAS or not -- after all, we can not yet determine that -- but if he found auto-antibodies.

the fact that he did not should tell us only that Singer could not find auto-antibodies in either Touretts or Pandas and nothing else.

 

Pr40 - yes this is true. I am so glad you posted. I think what you state is exactly correct and has been a large part of the PANDAS / PANS research controversy - those who say PANDAS is not a true entity use a narrow definition and are looking for specific markers - those who recognize PANS as an entity identify clusters of symptoms and more broad markers.

 

One of the problems with this Singer study is that Madeleine Cunningham and colleagues DID find specific autoantibodies, and found that these were more elevated in kids with PANDAS during exacerbation as opposed to in remission (convalescence), AND that the autoantibody reactions were highest in kids with Sydenham's Chorea, next highest in kids with PANDAS, and both of these groups were significantly higher in kids with tourette, OCD, ADHD or typical kids. So... when Singer comes along and does a study using different methodology and does not even DISCUSS how his findings are different than Cunningham's or how his methods were similar or differeht... it is like the Cunningham study never existed... and that is disheartening since so many of us have used her work to help understand our children's illness. The Cunningham study is here. http://pandasnetwork.org/CunninghamJNICaMKinase.pdf